Connect
Newly diagnosed with CKD (Chronic Kidney Disease) and terrified
Hello. I'm looking for some comfort because what I read on the internet about kidney disease is very bad. I had blood in the urine from the glomeruli of the kidneys in 2011 but we monitored it and I was doing very well things were quiet. Now suddenly it started to rise my creatinine and the percentage of my kidneys working is low as my nephrologist told me. I think I'm in stage 3 kidney disease. I'm doing tests all the time and I'm afraid that every time I go for blood tests my creatinine will be more and more up and I can't handle it all.I'm so scared it's progressing fast.I always shudder at illnesses and now something so serious is happening to me,it's a nightmare.I thought I was doing fine,I don't know what this new kidney problem is.Can can someone give me some advice to get courage for my disease? What would you say to someone who has just been diagnosed with kidney disease and is panicking? I am very sad and scared, I feel like my life is over and I am worried about my family how will I leave them .
Like
Helpful
HugInterested in more discussions like this? Go to the Kidney & Bladder Support Group.
Connect
If anything, I would expect the nephrologist to order tests regularly or put in a standing order for you. But I'm glad that you are proactive in getting them ordered. And I agree that you definitely want the most recent numbers.
As far as the MRI w/contrast, yes, those can definitely be bad on the kidneys. Sometimes when diagnostic tests have been ordered for me, they omit the dye id they can. If not, I don't get the test done. If I remember correctly, I once had an MRI done for which my nephrologist approved a substitute dye (presumably less kidney unfriendly) than the normal dye. I don't reme ber the name of it off hand, but I have seen it mentioned her on Connect. Wishing you all the best, and hoping for good reports on your upcoming annual appointment. 👍🏼
-
Like -
Helpful -
Hug
2 Reactions@my44 the salt is for low blood pressure, which could slow filtration in the kidneys. The protein I believe is for muscles, since muscle loss can affect eGFR. But I am going to ask to make certain.
-
Like -
Helpful -
Hug
1 ReactionThanks, @windyshores. let me know what you find out. Meanwhile, the explanations you listed so far sound feasible to me. I don't have a problem with low blood pressure so I would continue limiting salt. But I do worry about muscle loss because I don't think I consume enough protein, as I've been on a vegetarian diet. I have consulted with a dietician, but I haven't been able to incorporate them...things like soy and tofu. She also mentioned Greek yogurt which I used to eat years ago. I went out and bought some but never ate it. Not sure why. Right now, my main source of protein seems to be nuts, and to a lesser extent cheese. But I have to limit how much I consume of both of those. Any suggestions?
-
Like -
Helpful -
Hug
2 ReactionsI believe most people with CKD avoid salt and protein so you should talk about this with your doctor! I will let folks know the reason I am told to "push protein" because honestly I was only guessing.
-
Like -
Helpful -
Hug
1 ReactionOK, thanks. I'll be very interested in hearing what you find out.
-
Like -
Helpful -
Hug
1 Reaction@my44 I recently read a Member Spotlight interview on you by @rosemarya. I was inspired by your kidney transplant story. You said that of all your health issues your kidney health was a top priority (not a direct quote). I understand this. I had a pancreas transplant going on 20 years ago for the purpose of saving my kidneys. When you have been blessed to receive a transplant everything else must focus on protecting and preserving that organ. That includes immune suppression & other medications, dietary considerations (protein, salt, vitamins, minerals, supplements, hydration, masking & hand washing ….. plus many other factors. Congratulations on your transplant.
-
Like -
Helpful -
Hug
3 Reactions@windyshores you have so much experience and information to share. Just be careful to remember that we don’t prescribe or diagnose. Some members might think you are recommending more hydration, more salt, hydrocortisone or prednisone etc. People tend to forget that we are sharing our stories to support and encourage each other but we aren’t prescribing.
-
Like -
Helpful -
Hug
2 ReactionsHi, @cehunt57
Thank you for reading the interview and responding with such kind comments. I am just over one year post kidney transplant and recognize how much my life is influenced by it, especially concerning all of the things you listed. I do my best to follow the proper regimen to help keep my new kidney healthy and happy. And I do my best to ensure that "non-kidney transplant" doctors do the same. I do that by reminding them of those things that are harmful to my kidney when they suggest meds or treatments that I feel are not kidney friendly.
Congratulations on almost 20 years post pancreas transplant. The journey isn't easy, but it's certainly worth it! 😊
@cehunt I wrote that "My doctor recommended..." and never mentioned hydrocortisone or prednisone. The point was to talk to a doctor before going on any particular kidney diet because sometimes the diet is very individual, depending on cause of kidney disease. I made it clear my bp is low. Hydration is standard advice.
I am very careful with my posts. I don't understand why my responses have inspired your caution. Someone liked it so I must be missing something. I will stay off because I don't know how to be more careful.